Tuesday, October 29, 2013

If I Thought Last Week was a Rough Start...

I guess since it's nearly Halloween, the sight of John's eye nearly falling outside of itself could be classified in my head as some sort of of amazing zombie costume.  But, since there was no mask involved, I have a feeling getting a look at his eye when he was finally able to open for it a millisecond in the office at OHSU on Sunday, will be an image I'll never be able to forget.

Let me back up by reminding everyone what happened just over a year ago.  This post chronicles the adventures and reasons why he ended up getting a cornea transplant at the Casey Eye Institute at OHSU.  It was a successful transplant and healed so well, that a week ago, they opted to remove the stitches.

So, we took Whitley with us, not expecting much more drama than one might expect from a wisdom tooth removal (conscious sedation only).  It took longer than expected, but that was mostly because they were running behind in getting him in.  The one big concern, though, was that John's expert cornea doc, Dr. Faunfelder, asked if he would allow his resident to remove the sutures under Dr. F's supervision.  As it is very much a "learning hospital", John said "yes".  While we have no evidence to suggest this resident did anything wrong, it lessened John's confidence in how it ultimately went.

Whitley got a lot of special attention from the staff on this visit - not a bad gig for her!

His pain was pretty minimal upon returning home.  Advil overlapped with Tylenol seemed adequate to begin with to offset the expected discomfort of someone tugging stitched out of your eyeball (much less the muscles in the eyelid being strained from staying open).  But, as the week proceeded, his pain only intensified.  Which, didn't make sense.

By Thursday, I was practically begging him to take some of my Vicodin, as I knew that was a prescription they probably thought he still had, and knew how important it was for him to stay on top of the pain.  Despite his reluctance, it helped - but the pain kept escalating.  It became imperative for him to keep up with the pain meds every four hours just to stay out of the high number range of pain.

By midnight Saturday night, John's pain level was so bad, he began to throw up.  Now, this is where the dr. and I disagree.  They would say that it was the Vicodin that caused the nauseousness leading to the vomiting.  My belief (based on 9 years of coping with pain, I've learned a thing or two) was that the intense pain led to those symptoms.  After having successfully managed Vicodin for 48 hours without stomach side effects, I don't think it would result in that kind of problem three hours after having last taken it.  Instead, it had worn off, so John's body was doing that same sort of "shock response" that mine has done when it gets so intense - sweating, clammy, overheating, and throwing up.

Whatever caused it - we might not ever know - but, we do know that that vomiting episode resulted in dislodging the cornea and creating even more pain.  Fortunately, John was able to get some sleep after that, but upon rising in the morning, and trying to open that eye, he went back in to "shock mode" with unbearable pain - there was no way he was going to be trying that again, even though both of us felt like it would be a good idea to see if indeed anything looked wrong.

Our guts told us there was an issue though, so we wisely called OHSU, spoke to a wonderful on-call Intern, Dr. Nisha, and after deliberation with her assuring us that pain was expected, we all decided it would be wise to go ahead and meet her at 12:30 in the office.

Flash forward to that first paragraph - and yes, when he finally, excruciatingly opened that eye (in an effort to read an eye chart....as if!....forget the eye chart - I think one look at the eye will tell you that vision is the least of his worries!) - we caught just enough of a glimpse to tell us the "globe was exposed" and it needed to be closed ASAP.  The only delay for surgery was getting that little bit of dry Life cereal out of his system for anesthesia to give the go-ahead - and of course, gathering the forces for it to be done by the experts.

So, we did some scrambling.  We'd taken the kids with us for the appointment, and this time, felt it would be prudent to stay up in Portland as the post-op appt. the next morning would be very early.  While waiting for the surgery, I took them to Fred Meyer - got them some dinner and snacks, and checked them into our trusty Fairfield Inn.  I then returned - the surgery started about an hour after I got there.

Since the doctors didn't know what they'd find once he was put under and they could finally peel back his eyelid and get a look, they told me it could last anywhere from 30 minutes to 2 hours.  It was an eery feeling being alone in the waiting room without any staff in a virtually empty building - especially as I'd just been there when it was packed five days earlier with Whitley.  Finishing a novel I'd been engrossed with and answering texts kept me pretty calm for a while, but when the book ended and both of our cell phones finally ran out of battery within minutes of one another, - at about the 90 min. mark of surgery - I started sweating it.

About a half hour later, they told me they were wrapping it up and the doctor would be out shortly to let me know how it went.  The "Fellow" doctor on call was Dr. Lauer - where as Dr. Faunfelder is the renowned expert with the cornea, that is Dr. Lauer with the retina.  We were very blessed he was available.  He came out, drew me some pictures with his sharpie and explained just how close we were to John completely losing that eye.

As we expected, the cornea was detached, not only that, it was folded over.  Bulging out the sides were the iris.  In fact, part of the iris had to be removed (that's the colored part of your eye) from the top.  It's probable we won't notice it as that is part of the ring of color obscured by the upper eyelid.  There is a lens (just like a contact) that sits behind the cornea.  That was actually bulging out.  Miraculously (and very unusually), it was serving as a cork preventing the rest of the eye from being exposed.  It took the "hit" though - and had to be sacrificed.  Apparently, the lens is like a Petri Dish for breeding bacteria, and once exposed to the air could not be saved.  BUT - the retina was saved - as was the rest of the eye from being exposed to bacteria.  HUGE praises.  Had that not been the case....then, the whole eye would have probably been unsalvagable.

His transplant cornea also took a hit, though it wasn't as damaged as originally estimated.  The hope would have been that if they knew it wouldn't continue to provide vision for him, why couldn't they have secured a new cornea and attached that one instead.  Well, time was of the essence to seal up that eye and get antibiotics coursing through.  It takes time to find the ideal cornea match, and right then, vision was secondary to saving the eye.

John woke up not long after the doctor had explained the situation to me.  He didn't even know why he was there - pretty funny.  They'd pumped that eye full of anesthesia, so he wouldn't be in discomfort for quite some time.  That was indeed the case as he was actually able to get a pretty good night's sleep in at the hotel, and finally get some real food into his body.  (Go Burgerville!).

The next morning's appointment had us following up with Dr. Lauer.  He ordered an ultrasound that verified the retina was intact and healthy.  Another huge praise.  We then saw Dr. Faunfelder who was in clinic that morning.  While he and John have an incredible rapport, he was very sad to see him given the circumstances.  However, he was fully optimistic that next time around we'd have lasting success.

So, yes, that's where we're at - anticipating the "next time around".  On November 7th, John will be seeing Dr. F. again to check the swelling and gauge the healing.  If all looks good, they'll be scheduling the appointment for the next transplant surgery - this time involving a new cornea and lens.  I think we all unanimously agreed that this time around, we'll leave the stitches intact indefinitely.  It's only for cosmetic purposes that they would need to be removed - which for us, is so not worth it!

In the meantime, John is healing.  A lot less painful, but without that lens, he's pretty light sensitive.  When he opens that eye, the vision is really impaired as well - pretty much just light, color, and general shapes (which is actually better than they'd thought it would be).

At last count, we had over 65 people actually "commenting" on social media of their concern, prayers, and love for John - much less the texts we both received.  The love for John is pretty amazing and overwhelming - so very much to be thankful for when all is said and done.

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